The Spirit of Palliative Care
Life in the era of COVID-19 is strange and difficult. Millions have been affected, tens of thousands across the globe have succumbed to this novel virus, and almost the entire world has come to a standstill. While many like us, the fortunate, are cooped up safe in our homes, stocked with food, comfort, and entertainment, there are that many more who are less fortunate, the poor and the dying, who have been worst hit. While the prescribed action for humanity is to stay indoors until this virus stops its spread and a cure and/or vaccine is invented, there are little things that people and organisations, across the world, are doing that are making a difference in people’s lives.
PALCARE is a home-based palliative care service. While home visits are no longer being made for the moment, the service is still on, every day, through phone calls, texts and video calls. From improvised ways of making prescriptions available to patients, to making essential services like ambulances and medicines available, although limited in its scope, given the prevailing lockdown, the PALCARE team is managing patients the best we can.
Take for example the case of Naaz (name changed for the sake of maintaining anonymity), who was diagnosed with cancer of the lungs with cervical lymph-nodes, and was enrolled by PALCARE as far back as September 2018.
Naaz lived alone in Kalva, Mumbra. His wife lives with his sons in Bhandup. For the most part of his time with PALCARE, Naaz’s pain and other symptoms were well managed and kept under control, until recently when his general condition started deteriorating. At this point, Naaz felt it prudent to leave his home and shift in with his son’s family, where he can be better taken care of. Naaz and his family come from a very low socio-economic background. Their main source of income is from taking on odd jobs; but with the lockdown, and odd jobs no longer possible, their finances have taken a massive hit. Naaz was also scheduled for radiation at Tata Memorial Hospital (TMH), but that too has also been postponed, since the majority of doctors and health workers are fighting the COVID-19. The family’s lives have been turned topsy-turvy.
On a recent phone visit by PALCARE, Naaz expressed that the lack of funds left him with little choice but to cut down on spending on his full range of medicines as the little money that the family is able to muster is needed for food and for his basic pain medications. Normally for patients such as Naaz, during home visits, PALCARE would give the medicines for free. PALCARE would have also availed financial help for his household and nutrition through the various NGOs it works with.
But, given the current situation where home visits are not being conducted and the NGOs who would normally have helped out with financial aid, not being in a position to provide their assistance, PALCARE has electronically transferred funds to Naaz’s neighbour’s bank account (since he does not possess an account himself) and have pledged to continue the same till home visits recommence, thereby making sure that he doesn’t have to cut down on either food or medicines. Regular follow ups through phone are being done, instructions for care are being given. Naaz’s pain is being managed, and he, like all PALCARE’s patients, are being closely monitored by the team. PALCARE’S social worker is also pursuing his search for an NGO to help the family with food and other bare necessities.
PALCARE is waiting to get back to its regular home visits, but until then, it is these little acts that make sure patients are comfortable. This is the spirit of Palliative Care.
*Patients’ names, on this and following pages, have been changed to protect their identity.